kristi

NEW THOUGHT on mold inhibitors:

I was so suspicious of every food item while I've been

sick lately that I have been looking into every label with

all the extra time I've had lately being in pain! It is amazing

how feeling crappy inspires one.

The name "natamycin" on several

shredded cheese ingredient lists as a "natural mold

inhibitor" soundly suspiciously like the spelling of

some of the antibiotics I have been trying to do

research on. I've gotten some very bad reactions from

antibiotics lately. With some research I have found my surprise

yes, it "is" an additive not allowed in Canada and is an

"antibiotic anti fungal" originally used by

veterinarians for getting rid of ringworm on cattle

and horses and used in pharmaceuticals to get rid of

eye infections before used in America to spray on

cheese so they can sell this new trend of

shredded cheese that won't mold very easy with a long shelf life.

Yuck. No studies yet if it

can be passed through breast milk, blah, blah, blah. I

can't believe they don't have to label that. I know

it is in small doses but if your body isn't working

right to begin with I'm sure that isn't helping as

things get absorbed in the intestines. They claim in

rats that only 5-7% is actually absorbed in the small

intestine and 90% passes through the bowels.

Josh I want to know too, you are not alone. I'm currently in Portland as well. At this point I'd travel anywhere and relocate for awhile to get this figured out. Here's my story already posted...My original diagnosis showed up with high IgG and low levels of adrenal antibodies in my blood work from a gland specialist in a hospital. I was so sick back then and was seeing a zillion doctors in the Seattle area. I felt like I was dieing and all of them weren't coming up with anything. I kept asking where I could go for more tests and a different kind of specialist with what they found in the bloodwork but they just said no more tests, just don't eat wheat and see your GP. My general practioner said she had never heard of such a thing, she had no idea how to read the test results and ran to her computer in the hall shortly followed by bringing in a nurse for "dietary advice". The nurse said, "Now it's important not to eat flour." That was it! I think you got a longer sentance out of them. That is just scary. Oh my gosh there is so much more to it. I had learned more than that the evening before on the very first hit on the internet. They sent me out the door. I went back to the hospital pleading for direction and they aimed me to an allergy clinic were I spent hundreds and hundreds $$$ (on top of the thousands already spent) just for me to finally learn there is a difference between intolerances and allergies as this was showing nothing. They only tested for allergies not intollerances at that clinic. Nobody seems to be very educated in this. I sure we are not a unique experience. I'm afraid to experient and go backwards without a good doctor in the wings while I do home tests if that involves eating more wheat to get correct results. I'm up for a trip to the east coast, lower west coast, Europe??? Keep in touch if you get any direction, especially local ! Thanks

Kristi

THANKS everyone for your help!!! My original diagnosis showed up with high IgG and low levels of adrenal antibodies in my blood work from a gland specialist in a hospital. I was so sick back then and was seeing a zillion doctors. I felt like I was dieing and all of them weren't coming up with anything. I kept asking where I could go for more tests and a different kind of specialist with what they found in the bloodwork but they just said no more tests, just don't eat wheat and see your GP. My general practioner said she had never heard of such a thing, she had no idea how to read the test results and ran to her computer in the hall shortly followed by bringing in a nurse for "dietary advice". The nurse said, "Now it's important not to eat flour." That was it. Oh my gosh there is so much more to it. I had learned more than that the evening before on the very first hit on the internet. They sent me out the door. I went back to the hospital pleading for direction and they aimed me to an allergy clinic were I spent hundreds and hundreds $$$ (on top of the thousands already spent) just for me to finally learn there is a difference between intolerances and allergies as this was showing nothing. They only tested for allergies not intollerances at that clinic. Nobody seems to be very educated in this. I sure this isn't a unique experience. I just want to know if I have it or not. I'm afraid to experient and go backwards without a good doctor in the wings. Is there a special clinic SOMEWHERE...ANYWHERE in the country I can go to that knows what they are doing? I'd travel anywhere and relocate to get this figured out! Thanks for your ideas.

Will the complete panel and the gene test work for me? I have now been gluten free for a year but would still like to know more. Will that mess up the tests completely?

Kristi

Many eating establishments use pre-shredded cheese which it comes with a very common additive, Cellulose (usually not gluten) which is used to coat shedded cheese to prevent clumping and is white in color. When in doubt, check it out though. Most are safe.

I made some yummy meatballs for the first time last night using ground turkey meat, 1/2 c fresh onion chopped, 2 eggs, 2 cloves of a garlic, a bunch of Lea and Parrin's worcestershire sauce, a bunch of different Italian seasonings (since turkey tends to be a little on the bland side) I used quite a bit. I had a little trouble getting it to bind together so I added a small handful of 100% buckwheat cereal uncooked. I just learned that buckwheat is a fruit not a grain and has nothing to do with wheat. So far I've had no problems with it and it's so nice to have another option. I get it at the grocery store from Bob's Red Mill. It says tested for no gluten on the package. I made the balls and popped them in the oven to bake. The whole family loved them served up with spagetti squash and tomato sauce. I winged the recipe but I wanted everyone that can handle it to remember buckwheat as another option.

I'm hoping you will be able to meet up with some of the people 3 pages back.

Open Original Shared Link

Some of them seem to live there.

Kristi

I visited China ealier this summer. I think other people on this site were there as well. We talked about China (back on page 7 by now ) if that is helpful: Open Original Shared Link

Let me know if you have any questions.

Kristi

Much of the soy sauce in Thailand doesn't contain wheat. That place was the first big trip I went on after I got diagnosed and started to feel better. I loved rice noodles and Thai food in general. I had good food experiences travelling there. I spent most of my time in the mountains celebrating the Loi Kathong (Sp?) festival, it's a beautiful time at the end of the rainy season. Exciting Adventure!

Sorry I can't help you on Impromptu or Vietnamese cooking. The latter, of course, always beware of the soy sauce and other Asian sauces. (and "only" if you are travelling outside the US a lot of the MSG does contain wheat in much of Asia). I just wanted to add that for something informal, I went to DaVinci's Bakery and had the best wheat free meatloaf sandwich. They don't label the bakery as "Gluten-Free" because they don't want to scare away the mainstream public but I asked them and they confirmed ALL is gluten-free. It is nice to have choices.

I had some from Widmer, Portland Oregon, that was great and I didn't get sick. If you are in Oregon try New Season's Markets. They have been publishing that they were suppose to getting some gluten-free brew (I think Bard's) in this month.

Hi, I'm a bit a newbie. My husband's working in Portland so I quit my job and moved down here. I love Portland. Worst part has been moving away from all my friends. I'm from the Seattle area. It seems like there are quite a few places to go out and eat. I love the art scene here, it is kind of a trippy city. It's nice to meet you.

Hi, it seems Portland is a bit of a gluten-free mecca. I think we are lucky to be around resources. I just moved down here from the Seattle area and love it here. I am still looking for a doctor in this area so if anyone has had any good experiences PLEASE let me know.

My tips to add, I brought up the gluten-free topic with a person at New Season's market and they gave me a gluten-free tour of their store. I found out about products that I hadn't thought of before that would cross over to other shopping places... and....Widmer Brewery (such an unlikely place) currently has on tap, a gluten-free brew, some type of sorgum thing. It is left over from a contest they entered and no they won't be putting it in bottles and they will only be carrying it until it runs out, so call first to make sure they still have it. I'd stay clear of the food on the menu though. I was sooooo scared, like I was sitting in a bees nest while I was in there, surrounded by gluten, but I felt great after I had it.

Hi Sierra and other Portland area people! I'm new to this area and don't know anyone down here yet. Where and when do you find out where meetings are happening? I've never been to any. Do groups have websites where they list them? Just read about the one in Salmon Creek, I'll have to learn where that is, any in Portland? Any good doctors or clinics in this area that anyone has experienced? Thanks, Kristi

I was happy to notice that Kirkland Brand was posting "Gluten Free" on some of their labelling of hot items like their cooked whole chickens. I also asked and they brought out a book at their deli counter and I can now eat the chocolate dipped ice cream bars. They seem to be really good about changing gloves before dipping the individually wrapped bars. I thought this would help the CC because another part of the kitchen serves Pizza. I called to thank the corporate office about the clear labelling and they told me the main allergens in the soft serve yogurt at the deli was dairy and egg so for some that might be an option too.

On my never ending search for places to eat out safely I ran across this great link. Way to go San Diego! You have hit many of the major chain names under your Resturant gluten-free statements resource guide. THANKS

Open Original Shared Link

I've posted this before but it was so great I don't want anyone to miss it. I just visited to the Bay area. I had great experiences eating outside at the seafood grotto down by fisherman's wharf. You can watch STEAM all the seafood in desinated steam kitchens. I opt not to risk the cocktail sauce so maybe you'd feel better bringing your own. I just had squeezed lemon. It was so good I kept going back (and I hate touristy areas). I also ate great sushi in the Castro. Beware of the soy sauce. Some of the best meals I've had out in a long time and have to pass the word to any seafood lovers out there.

Hey Corbett's Fish House just opened a second place called the "Hawthorne Fish House" on 4343 SE Hawthorne Blvd. in Portland that has the same great gluten free menu as Corbett's. I just love the chocolate cheese cake! I also like their shrimp cocktail. I also just stopped in this week at Old Wives Tales after reading an earlier post and asked about their gluten free options and...blow me away, they handed me a four, count them, a 4-page gluten free menu and spoke to me about how many people have been coming in lately requesting it. I haven't eaten there yet but wow! I have been eating a place called Sushi Land over this last year. I bring my own La Choy soy sauce for dipping as they only offer a wheat type. They have sushi that cruises around on different colored plates for different prices. Watch carefully because some types have obvious sauce squeezed on top and I don't trust the rolled multi-varieties. I know that fake crabmeat can have wheat. I just ask for the "prime tuna" (3 plates of it)and I also eat the the plain ones with the cooked shrimp sitting on top. I have never had a problem but you might request that they change gloves because sometimes they handle tempera that is cooked in the back kitchen. They make up fresh stuff on request, don't be afraid to ask and it is a very economic place to eat. They have a new location in the Pearl district and a older one by the convention center. I think their might be one in Vancouver too.

No problem, I've sent both of you an email. Hey another thing I always have with me is a note from my doctor that explains I have a medical need to be on a restricted diet. This helps locally since I'm always packing all kinds of weird food into events. I brought it on my trip but no one cared about my luggage. It felt good to have it.

Well, I might have been off-base with the flavoring idea. I had read somewhere about someone else having trouble with vanilla. I went off lattes and dairy then got another sick attack days later (one very long night) so I don't think it's the coffee. Sometimes I just can't digest things anymore.

'susan p-r' Did you want me to send you the letter I used in China that I had translated before I left with my group? It has a lot of details. I would be happy to mail you a copy (or we could see how a fax would turn out) both in English and the Chinese version. I'm not sure how to send it online here, as I don't know how to use my computer to write you in Chinese. : )

Kristi

Suzanne, sounds like a wonderful expereince and you had a good tour company. I went with China Focus and their office racked my nerves with lack of communication until I was on my way and met my national guide over there. I think it was the part of losing control, I don't usually travel with tours. I love the "bring your own" pan idea. I'm sure it seemed like a pain, but wow, if languauge breaks down that would be so helpful and you rest assured. Hopefully we'll hear back from Susan p-r.

I don't know if I have a casein intolerance. I never used to have this problem but the way my body reacts to things has changed so much. From what I can tell it has happened at different stands or my reaction has taken time to get over. They weren't making food there but maybe they had been eating a snack. I'm still learning where I need to go get tested successfully. I'm on the West Coast. Terrible place not to be able to drink coffee. Part of my self was just sooooo happy I was feeling good enough to try.

I'm pretty new to this whole celiac thing so this might be an obvious mistake. I was on a good wave of health recently and went back to some of my old patterns in life and now I'm feeling crumby off and on again. I used to start my mornings with a latte. Not always the same stand. I was reading on another link warning about flavorings in vodka and "bing" a big red light came on about having "vanilla" or "cocoanut" flavoring in my latte. Now I go through stages of upset (both emotional rage and sadness of withdrawl and physical illness too) and then hope again with thinking of more food options and then my favorite reaction...denial. Please don't let it be my latte and if it might be, does anyone know of any safe flavorings I can buy and just keep in my car so I can add it to my drink afterwards? I know there is probably more pending issues for some. Sorry, I don't think I can face life without my latte ever again, well at least on the good days now that I'm feeling good enough to be out in the world.

Which tour group are they using? I could send you a dietary request page that I paid to have translated in Chinese before I left explaining about cross-contamination and and all the grains issues. It goes into detail and is a page long. I never got a confirm from my tour company that I believed they understood and would help. I got stressed out and frustrated right befgore I left. My guide once I got there was my saving grace and I used the translated page with him. I think that if he were to eat steamed rice, hard boiled eggs, steamed veggies at the table and bring his own foods to add to meals that it would be tough but he could do it. I found it handy that I packed some tupperware containers and I always filled them up with eggs and rice for snacking in my room. I know it feels so much easier at home when you have control and can go to the grocery store yourself. I thought China was so amazing to see and I am planning on returning to one area I liked very much.

Kristi